Posted on April 21, 2013. Filed under: Uncategorized |

I knew I shouldn’t have accepted the appointment with the neurologist for Friday the 13th.  I’m not superstitious, but it just seemed like a bad omen that the earliest appointment I could get was on a Friday the 13th.  I took it anyway.  I hadn’t been able to walk properly for nine months and no one had been able to shed any light on what was wrong with me, not a physical therapist, not my primary care provider, not an orthopedist.

The orthopedist said he wanted to refer me to a neurologist, “a smart doctor,” he quipped.  This was no longer the simple muscle injury I had thought it was.  (Maybe I had torn a nerve?  Can they repair that with surgery?)  I called my husband from the parking lot to tell him I needed to see a neurologist now.  I was nervous.

I spent the five weeks between appointments researching, so I was pretty well informed about some of the possible neurological explanations for my symptoms when I met the neurologist on April 13, 2012.  I secretly worried that Multiple Sclerosis was a real possibility.

The appointment entailed 3 solid hours with a neurologist with a fantastic bedside manner.  (Disclosure: I am really difficult to please emgwhen it comes to medical professionals, so this is high praise coming from me.)  He conducted an EMG to assess the electrical activity in my muscles and a nerve conduction study to assess the ability of my motor nerves to perform electrical conduction.  The EMG felt like what I imagine it would feel like to have a thread of electricity from one of those electrostatic balls zap through my muscles.  It was relatively painless, but definitely a new experience.  The nerve conduction study was a bit more annoying, but not overwhelming, though I probably wouldn’t want my kids to have to undergo one.


Ten months earlier I injured a muscle on the bottom of my left foot and calf while riding on a recumbent bike.  I thought I had just pulled a muscle so I did what most people do when they have a seemingly minor injury; I let it rest, I elevated it and took some ibuprofen.  This seemed like a good excuse not to re-start the exercising I really didn’t want to do anyway so I got back to being busy at my computer.

A month later I had foot drop.  I was on my way to a business trip to Boston and my foot didn’t seem to be acting right during the long walks in the airports.  By the time I was with my client I clearly had a limp and an inability to push my body up stairs with my left foot.  I promised myself I would see a physical therapist when I got back home.  I still thought I had a simple muscle injury.

My physical therapist referred to my injury as “middle aged man calf syndrome.”  He said he saw a lot of men who injured their calves after jumping back into exercise full throttle with their 45 year old bodies as if they were still 25.  This is basically what I had done on the recumbent bike.

Only the PT exercises didn’t help.


During the exam I asked the neurologist questions about what he was seeing.  (That reflex seemed a little bigger than it should be, didn’t it?)  Based on his answers I could tell he was quickly crossing off large categories of diagnoses from the list of possibilities.   Even though he had said early in the process that he wanted to take in all the information possible before making a diagnosis, I knew we were pretty far along so I asked him if it was MS.   He was hesitant, but answered honestly, “I think I’ve ruled that one out now.”  I knew that the only thing left was ALS.  I spent the next 40 minutes letting him finish his exam and letting him give me his spiel about what he was seeing, never mentioning ALS.  So I asked him point blank.

He listed additional tests he wanted me to have and that he wanted to discuss the results with my husband and I the following week.  I was not fooled by his poker face.  I had my diagnosis.

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8 Responses to “Diagnosis”

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I’m glad to be able to know more about what you are going through. Much love and prayers going your way. Kelly

Thank you for sharing your story, Janice.

Janice, Thinking of you and your family. Thank you for sharing (eloquent as usual, one of your many gifts).

Thank you for sharing more. I think it adds so much to know your personal experience. Your universal message is so incredibly important and at the same time it is so meaningful to read about your personal story. Hats off to you for having such amazing courage. As you know, I am a huge fan 🙂

Janice, I’m sending much love and good vibes. I’m here if you ever need me. Love you always,

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powerful, janice–strong and honest . . . very you:) thank you for sharing!

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